They tell us to exercise.

[DianeD]

I'm with you Marti!

Exercise is a joke if you are exhausted before you begin. I guess though it just means 'keep moving'. I don't go for walks though people persist in saying 'oh, you should walk'. I don't enjoy wobbling, having my legs feel like they are so weak they will give out or veering off in a direction I hadn't planned to go.

A couple yrs ago I broke my left fibula when I fell. I don't want to do that again.

There is an exercise product which is a small pedaling device. You can use it when you are sitting to just pedal; might be good for circulation. The exercise bands are pretty good too as long as you can grasp them firmly enough not to get hit when they let go :-)

I do little things; to others it doesn't seem like much, but to me it's fine.

Diane

[DianeD]

I agree with you

[QUOTE=whatismyname;1432040]"Just try something, you will be surprised"

I have been surprised at the way doing even small amounts of exercise makes me more exhausted. Maybe it's a progressive ms thing. Maybe it's an "everyone is different" thing. One thing is certain. Doing exercise doesn't seems to make any difference for me physically except make me feel bad.[/QUOTE]

For some of us, exercise is not the answer. I do what I can and not going to judge others for doing, or not doing it.

It reminds me of the argument for using DMD's and those who say the DMD's (or conversely 'exercise') is keeping them going.

There is no proof, because individually we don't really know if we would have rapidly progressed or not!

MS is so weird, it can just remit entirely!! Or for some it can slowly worsen or quickly worsen. It almost seems like a designer MS; each person has his special MS course.

I started out slowly; my original symptoms quickly went away. I went for years with no worsening, but now, even though on a DMD it is getting worse. Sometimes I just chalk it up to fate.

I get exercise, by the way by circling my house' interior when I have my truly awful itch! I exercise in the daytime or nighttime! This is not voluntary; just can't sit or lay still when the itch is so severe. I even wake up at night and walk! So perversely, I do exercise. :-)

Hang in there; I feel your frustration. Diane

[wendya432]

I have to say, I think this really depends on what kind of damage you have going on.

I will say that I started doing things like yoga, aerobics, kickboxing, etc, when I was in high school. I loved it and I found it helped so much with my depression that I didn't even need to be on meds anymore. I made sure that exercise was a part of my life. In college, whenever i needed to fill in an extra credit or two to get full time status without overloading my coursework, I would sign up for weight training, or circuit training, rock climbing, etc, etc. I was at the gym a few days a week, plus doing yoga or aerobics at home. I have a nice collection of DVDs of every kind of exercise.

I had been going to school to be a physical therapy assistant. I at one point considered taking classes to be a certified fitness trainer.

So you can see, I know a bit about working out. I know how exercise is good for you, body and mind.

A few years ago, I noticed I was not able to do as much. I couldn't lift weights like I used to. I was getting tired quickly. I had also had 2 babies, 2 years apart. So I figured I was just over tired. But slowly little by little, my endurance and abilities just declined.

Today, I am at the point that I cannot do the My MS yoga DVD. I just literally do not have the strength. It was a slow process. And there are days I tell myself, Ok come on, just get up and do it. And I end up not being able to get off the floor.

My neuro has determined I have UMN damage. Not sure if it's from PPMS or something else. But basically I have muscle weakness from nerve damage.

I still try to walk as much as I can. I try to stretch and try to keep that spasticity from taking over. Just spending the time it takes to clean the house is enough to get my heart rate up and usually leaves me completely exhausted.

I'm not saying that everyone should quit exercising. I'm a huge supporter of exercise. But not everyone is the same. MS is a nasty disease. Not everyone in a wheelchair is there because they just quit exercising. When the nerve signal quits, it quits. Of course, there are things to keep you from getting contractures. ROM exercises, etc.

But sometimes people need to remember to be kind to each other here. Encouraging exercise is great. But don't make it seem like everyone that just gets up and exercises is going to be out running. Because no one knows what each individuals MS is like.

[ledybug]

Biggest Loser For MSsters!!!

I love watching The Biggest Loser! That said, I wish they would produce a journey for those of us "disabled" people who cannot do the regular exercise program!

[Jules A]

MS is a nasty disease. Not everyone in a wheelchair is there because they just quit exercising. When the nerve signal quits, it quits. Of course, there are things to keep you from getting contractures. ROM exercises, etc.

But sometimes people need to remember to be kind to each other here. Encouraging exercise is great. But don't make it seem like everyone that just gets up and exercises is going to be out running. Because no one knows what each individuals MS is like.

I agree and imo you are a perfect example of someone who used to be physically fit and MS made it no longer possible. You know the uncomfortable feelings from normal working out and that is not what you were experiencing as your MS progressed.

I hate this disease and also wanted to say while I'm sure it doesn't hurt I don't think that passive ROM exercises are able to keep most people from getting contractures.

[tommylee]

A few years ago, I noticed I was not able to do as much. I couldn't lift weights like I used to. I was getting tired quickly.
But slowly little by little, my endurance and abilities just declined.

Your story is close to mine sans the baby having part.
I am a 49 year old man that has always kept myself in pretty good shape.
(I have never had a Dr. recommend ANY lifestyle changes. I even ask for suggestions!)

Still I have a steady decline of strength and agility. No matter how hard I fight I am losing ground.

I do believe exercise and diet are very important, but there is no cure and MS is progressive...it's going to progress.

I do the food Nazi routine and exercise because it seems to make me feel better. If it made me feel better to eat deep-fried butter? I would do that.

I do think some people with very limited energy may be wasting time with exercise.
Just do what works for you. Only you can judge the results.

[barnettmichell]

Ibuprofen and just do what you can I started small then worked up and take naps.

[Tawanda]

If it made me feel better to eat deep-fried butter? I would do that.

I totally agreed with the entire post, but this cracked me up!

[Snowmonkey]

Cold room & cool collars

Hi, all. I'm new here so I thought I'd jump in on this one. My therapists at the Jimmy Heuga Center, back in 1995, saw I was unable to walk more than a minute without pain or move around at all if my body temp went up. Most MSrs have a lower body temp, often like mine at 96F. Raising your body temp by just 1 degree exacerbates all your symptoms & pains.

It's just not possible to get consistent exercise and most of us consider ANY physical activity a success if we make it all the way through, like getting in groceries, emptying the dishwasher etc. We have to get our body temps down and keep them down in order to be active.
Heuga Center advice that's worked for me :
- be in as cold a room as possible
- sit to exercise using large gym ball ( just sitting on the ball watching tv gives your core muscles a little work as they try to keep you balanced)
- wear cool collar/wrist wraps/cooling cap, a cooling vest or place a chilling towel around your neck/over your heart to cool your blood at the major return points.
I've had best results using a Frogg Toggs Chilly Pad cooling towel.
- have a fan blowing on you too
- swimming at the YMCA or hospital pool which is too warm can be done wearing a frozen cool collar and staying in the shallow end (must have lift or someone to help get you out if legs go weak)

I'm a snowbunny living in Arkansas so I really am unhappy due to the heat here. I want to exercise regularly but I can't so I just go for the small victories of everyday living and try not to freeze my husband to death as I turn the thermostat lower....and...lower

[misslux]

I think we all have different ideas on what constitutes "exercise".

For me, it is anything outside of my daily activities but within my fatigue, comfort and mobility level. On a good day, that could be 10 minutes of walking, 10 sit to stands, 10 tiptoe stretches, 5 minutes air punches, two flights of stairs. On a bad day, 1 minute of air punches.

[aisunnen]

a little goes a long way

I'm with the group who says "Whatever you can do, do it." I was very active before the dx (2003.) Ballet until I finished High School, then years of general good health and activity, then yoga for almost 10 years until the diagnosis.

The stretching of yoga really helps, and believe me, it's good cardio! You can do it slowly. I could no more zumba than fly to the moon, and I would knock things over (including myself) if I flailed my arms.

But I can hug my knees, which feels better than nothing, and I can pretend I'm about to do a sit-up, which strengthens the tummy. Try to keep your weight down, that helps, too.

Now I'm nearly 70 years old, and fatigue, spasticity and foot drop and balance are daily problems. Take your depression meds, they ward off bad dreams. And just do what you can. I'm sorry for your pain.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Tawanda]

just a very small tool, not a fix

I keep scanning this thread in hopes of finding a post by someone who found an exercise routine so great that they barely notice they even have M.S. No such luck...

[weewee2]

Living with my MS

I have had MS for the past 21yrs bringing up 3 children on my own for 14 of them. It has got worst as time has gone on, but I have always had the following sayings. "Things happens, there are lots more people worst of than myself".

I have had moments where I myself have questioned those words, believe me.

In the last 14 months I started having heaps of different things happening with my MS. I decided there had to be something I can do better.

A new gym opened up with a decent weekly pricing plan. I decided after 52.5 years I should join one Off I went even got given a Personal trainer free for a couple of hours. After the first day I thought I was dying, well that didn't seem to change much for the next 3 wks at least.

Been stubborn I wasn't giving in for no beggar, much to everyones dismay. I kept on doing this 3 times aweek for 7 months, then I decided it was a good time to sell my home.

Moved back to my hometown, with all the changes etc never rejoined a gym. Always found excuses, but I'd had enough when I got sick of using two crutches to even just go to the toliet

Decided to get off my bum & look for a gym, had five to choose from. I went into see a few & decided which one was right for me. So have been back into it for 60minutes, 3 times aweek.

I'm still struggling with things, but I'm feeling much happier within myself. Things have improved with getting around, lifting things, actually overall things have only got much better.

Its also good to have a network of family & friends. I've found so dear friends through MS sites over the years. Its always nice to have a yak with someone, who understands what you are going through. Belive me I'm no angel, but I've choosen to get on with my life for the better.

So everyone out there suffering from MS or no matter what yor are suffering from, keep you chin up. Things are what you can make of them keep positive.

** Moderator's note - Post broken into paragraphs for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print. **

[Saavik]

Exercise routine

I used to be a very active person both physically and mentally. I used to practice modern and traditional dance, I even had quite a few shows but had to quit when I started college. After 7 years of being with that dance band I surely felt like someone took away a precious thing from me. So I joined a fencing club which had a more relaxing training schedule. After one year I got so much to study and figure out that I had to quit that too.

But I made myself a promise that no matter what I will keep myself in shape and exercise every once in a while. After I got diagnosed with MS it took me a while to adjust. One day I tried to do the stretching exercises I used to do when I was a dancer. Silly me I went on doing them ALL in a row! What a wild ride I had! After hating myself for one week because of the muscle and joint pain I decided to try again.

This time I gave a name to each exercise and a number describing how many I should do each time. I started with few then slowly added one more.I won't say it makes me feel like MS doesn't exist but I certainly feel good when I can mark this task as done in my daily schedule. My age might be a significant advantage so maybe I am just lucky I can exercise.

Sometimes I get muscle aches just out of nowhere, while sitting at computer. I got some heat/cold packs and apply one on the area where it hurts. It helps me a lot.

For some even the simplest things look like a challenge and all I can say to them is keep going! The fact that you are still alive and fighting counts just as much as anything else. And to be honest, most of the times even a healthy person doesn't have time to exercise because we live in a world which is very demanding. Just work out what's best for you and stick to it as much as possible.

[Thinkimjob]

Yes, no, stuffed, myself. I do admire your willingness to fight.
Long may it last.